Help Brandon & Brianna Fight Fanconi Anemia

For: Brandon & Brianna Williams
Middlesex, NJ
Organizer: Erica Williams
$32,509
of $30,000 goal
100% Complete
Raised by 218 donors
This fundraiser is closed. Thank you for your support!

The Story

Fanconi anemia. My entire life I'd never heard of it but now it's become my life. A disease so rare only 1 in 160,000 people are affected, yet both of our children have it. Brandon's bone marrow is failing and currently there are no good donor matches. Brianna isn't symptomatic but doctors predict she will experience bone marrow failure within the next few years. There are only two centers in the country that specialize in this syndrome and we have chosen to take them to the Fanconi Comprehensive Care Center at the Cincinnati's Children's Hospital. All funds will be used to cover medical expenses and travel/lodging expenses in order to provide our babies with the best care possible. Thank you, thank you, thank you for your donations! 

HOW CAN YOU SIGN UP TO SAVE SOMEONE’S LIFE? Blood type does not matter. The test is a quick and painless cheek swab and you can opt-out at any time. The test takes less than 5 minutes and you, yes YOU, could save someone's life! Here's how you can register... 

* Order a test kit! You can order a FREE kit online at www.bethematch.org/join. Click "Join Online" and when prompted, enter the promo code "Family" to receive a free kit. The online drive is open only through 3/31/15. Request your kit today!


MORE WAYS YOU CAN HELP BRANDON & BRIANNA

* Follow & share our story.The more awareness we can raise to this terrible disorder, the better our chances of finding a cure. Please follow and share any of our links: 
Tumblr -bowandarrowbabies.tumblr.com.
Facebook - facebook.com/bowandarrowbabies
Instagram - instagram.com/bowandarrowbabies


Please email [email protected] with any questions. 

Fundraiser Updates

Posted on March 30, 2016

Posted on March 30, 2016

Since our return home, Children's Hospital of Philadelphia is managing Brandon's health and yesterday we had a very exciting appointment. Nearly 9 months post-transplant now and the hematologist says Brandon's blood levels are wonderful and his immunity is nearly normal. That's tremendous news because this means he can resume almost all regular activities, such as rejoining his school classroom and playing club soccer. The next milestone will be when he reaches one year post-transplant (this July), at which point he'll receive the vaccinations that the chemotherapy wiped out, which will allow him to resume ALL normal activities like flying in an airplane and swimming in fresh water. It's been a long journey but we're grateful for Brandon's amazing recovery. Thank you everyone for your continued support and well wishes. xo

Posted on September 1, 2015

Posted on September 1, 2015

Today Brandon is 56 days post transplant. These past two months have been a blur, but we're thankful that so far the doctors are pleased with Brandon's progress. From the beginning Brandon responded really well to the donor cells, so much so that he was discharged only 19 days after. As a result of the chemotherapy, Brandon's immune system is not strong enough to combat germs, so we've been on strict orders to keep Brandon quarantined to our apartment (in Cincinnati). His only outings are to the hospital clinic. He has an exceptionally mature understanding of his situation, and as a result doesn't complain about his restrictions. Having Brianna here helps enormously in avoiding boredom. We couldn't be happier with the way things are going. That's not to say we haven't experienced our share of anxiety. A couple of weeks ago doctors detected a virus in Brandon's bloodstream which compromised his engraftment (donor cell) levels. Luckily they caught it early and a couple of weeks of IV antibiotics suppressed the virus. He is off the antibiotics now, and we're just waiting for the engraftment levels to rise on their own, as his own t-cells begin to die off and become replaced by the donor's t-cells. Stay tuned for updates! As always, thank you for your support. 

Posted on May 1, 2015

Posted on May 1, 2015

David and I have very good news that we’re now ready to share with the world. Cincinnati Children’s Hospital has found two transplant donor matches for Brandon. June 15, 2015 Brandon will have a complete pre-op evaluation in Cincinnati that will consist of five days of various testing to ensure he’s still a good transplant candidate. If results are good, we’ll return to Cincinnati June 30, 2015 to be admitted for transplant. Transplant starts with a round of chemo and sometimes radiation. Meanwhile the donor will undergo the donor process at a transplant clinic near their home. Once the donor’s sample is received in Cincinnati, Brandon will receive the bone marrow intravenously through a central port (an IV in the chest area). At that point he’ll be monitored closely to see how his body is responding to the new bone marrow. We’ve been told to expect to be hospitalized for 6 to 8 weeks, and then we’re required to stay close to the hospital for at least another three months. David is planning to work remotely as long as he can, but he’ll likely have to fly back and forth during this time. Then there’s the post-transplant isolation period. It all depends on Brandon’s medical condition, but even upon our return to NJ, Brandon may be required to stay isolated (away from public places) for up to a year. When doctors explained this to us, we certainly had a freak out moment (confession: we’re still in that moment) because it’s all so overwhelming. We’re scared. So scared.  We’re scared about making our “healthy-looking” kid really, REALLY sick. We’re scared about how the entire transplant procedure (chemo, bed-bound, away from home, away from friends, isolation, not starting 2nd grade on time) will affect his spirit. What kind of parents are we to cause him to be sick when right now he’s so happy, energetic and carefree? We took some of these questions to the wonderful hematology group at CHOP. They took time out of their busy schedules to meet with us and discuss all of our concerns. They agreed with Cincinnati that this is the right option for Brandon right now. So there it is. Two hematology groups from separate institutions telling us this what we need to do to give our son the best chance of fighting this blood disorder. Of course, for our own selfish reasons we want to say no way, we’ll talk again when Brandon’s symptoms are much worse. Unfortunately that’s not how it works. Statistics show that transplants are most successful when the patient is strong and less symptomatic. Statistics show Cincinnati is one of the best institutions at providing successful bone marrow transplants for FA patients. Brandon is our son and we’ll do ANYTHING for him. I’ll give my life today to give Brandon and Brianna healthy lives. Please pray for us. Please visit us prior to transplant as making wonderful memories for our kids is top priority. And most importantly, please learn from other people’s experience and treasure those whom you love and DO NOT take their presence for granted.

About the Organizer

Report Fundraiser

Report Fundraiser

*Please report fraud and Terms of Service violations only. Personal disputes will not be reviewed.

* YouCaring will not use or share your phone number or other information for marketing purposes.

Comments

Supporters

Grab Our Widget

Help Brandon & Brianna Fight Fanconi Anemia

Grab Our Widget
Facebook Share Button